Sean Skippen

Raising money for A Wish For Eben

Fundraising for Muscular Dystrophy UK
£1,323
raised of £450 target
Donations cannot currently be made to this page
Event: Pedal Paddle Peak 2024, on 6 July 2024
A Wish For Eben
Campaign by Muscular Dystrophy UK (RCN 205395 (England and Wales) - SC039445 (Scotland))
Thanks for visiting our A Wish For Eben fundraising page, and for your interest in supporting our family to find viable treatments and cures for Ullrich Congenital Muscular Dystrophy (UCMD)

Story

Our team of (lucky) 13 is raising money for MDUK, specifically in support of our friend and colleague Helen, whose son Eben has Muscular Dystrophy. We'll be undertaking the MDUK Pedal Paddle Peak challenge - an unconventional triathlon of sorts which involves a hilly 30 mile bike ride, a 2 mile canoe paddle across Ullswater, and a tough climb up Helvellyn Mountain which is the UK's second highest peak.

Eben's muscles are unable to produce Collagen IV protein, and alongside his symptoms, this led to him being diagnosed with Ullrich Congenital Muscular Dystrophy (UCMD). UCMD is a severe, life-limiting, progressive condition that leads to extreme muscle weakness. It affects the skeletal muschles which impacts areas like walking; if Eben gains the ability to walk he will lose this skill in early adolescence. He is also likely to face respiratory issues, muscle contractures and scoliosis in later life. Treatments and equipment are available to help manage these but sadly, there is currently no cure for UCMD. However, there is hope in the form of promising research being done in this area.

80% of funds raised will go towards UCMD research and 20% will be kept in a welfare account for Eben's future needs

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About the campaign

Thanks for visiting our A Wish For Eben fundraising page, and for your interest in supporting our family to find viable treatments and cures for Ullrich Congenital Muscular Dystrophy (UCMD)

About the charity

Muscular Dystrophy UK

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RCN 205395 (England and Wales) - SC039445 (Scotland)
Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions.

Donation summary

Total raised
£1,323.00
+ £320.75 Gift Aid
Online donations
£1,323.00
Offline donations
£0.00

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